DLA child change of circumstances

[Rmh1107]

(first post and have no idea how to work Mumsnet)
My daughter is on waiting lists for ADHD and autism, I applied for DLA back when she was 10, got accepted a few months later after she turned 11. She got MRC and LRM When I filled out the form I explain that although yes she can walk fine, she doesn't cross roads safely due to not looking etc. If she is to have a meltdown she will just turn around and walk off. She was awarded low rate mobility.
Now she has gone into secondary school she's wanting a bit more freedom and has asked to walk to school with a trusted friend. She doesn't have to cross main roads and it is a familiar route for her about 5 minutes walk time. Is this something I need to report as a change of circumstances? I've read that the criteria is 'cant walk safely on Unfamiliar routes' which she can't, but is still making her way to school on a familiar route. She doesn't do it on her own ever, and sometimes I will still walk her if she's having a particularly bad day, but she is wanted to walk with a friend now. I don't want to get in trouble!!

No, don't make life harder for yourself than it needs to be! You've said that the criteria states unfamiliar routes and that still applies. It's hard enough doing all those forms every time they require them, you don't want to do them again as an extra!

Thankyou, that's what I thought too, I just can't get over the feeling of feeling like a fraud. She's high functioning and the issues and stuff that I do to deal with them have become so normal that I feel like I shouldnt be entitled to anything!

I wrote to the DLA about a nearly identical issue in May. They rang me back a couple of weeks ago to talk to me and the award didnt change. They asked a few questions about public transport which my child cant do, and about unfamiliar routes. They didnt seem to mind one familiar route accompanied by another child. Especially as i dont think my child could do it alone. My son is at a special school though.

Its supposed to be compared to a typlical child if the same age. A lot of year 7s go all over on their own.

I would inform the DLA. I had a similar issue with PIP in that my son could not rough chop but now he can. Overall he still can’t plan and prepare nutritious meals for himself but he can cook some basic food - mostly inedible or poor tasting. Hence he is at life skills college - but I still emailed to tell them the change for the sake of completeness. Doesn’t change the fact that at 19 he can’t be relied upon to fend for himself when it comes to nutrition. He will eat a wrap covered with brown sauce for lunch. Sadly he needs PA support to be safe and can’t be left for lengthy periods but I’m hopeful that life skills will change all that.

I would be worried about relying on the other child for your daughter’s well being unless you are fully confident that your daughter can make the journey alone. As you suspect ASD your daughter won’t be able to read her friends emotions and intentions and there is more likely to be a fall out. Also ASD is unpredictable and even I have been taken aback by my sons sudden meltdowns usually relating to events that occurred in school. That’s quite some pressure on the other person - do the parents of the other child know that yours is ASD.

Does she have an iPhone and can you track where she is ?

It seems to be very specific things that set her off, none of which I think will happen when walking with a friend. But yes I get what you're saying and it's definitely something I need to think about before going ahead. I did think maybe following a little while behind her, so she still gets the independence but I'm still within reach if she needs me

She's under the care of hospital for her eyesight, awaiting operation for that.
Already diagnosed Dislexic and on the pathway for autism. Currently waiting for an appointment at a center to assess for ADHD. I wrote down information on home life struggles and struggles outside the house. I included reports from schools, specialist teachers, senco and educational phycologist. All hospital reports for her eyesight. I didn't believe she would be awarded as I am aware there are many others greater in need, but she was awarded not so long back. I've never had experience with anything like this before so I'm just trying to find my feet also.

Don't update them - the criteria still applies. I'd also maybe rethink sending her off with just one other child if possible. A group would be better or if you could follow behind.

I got DLA at the same age at the same rate for a mix of ADHD inattentiveness as well as being deaf. I did end up being hit three times by cars. Twice not seriously and once that left me with a degenerative spinal injury that slowly got worst over the next 15 years and eventually left me a wheelchair user. They all happened when I was walking alone - the rest of the time I stayed in a group or with an adult.

I get the feeling like a fraud part - I've felt it many times myself too. But everything is always fine right up until it isn't and you suddenly get a reminder of what the risks really are.

Yes i was pleased i wrote and had a phone call. The person who phoned was understanding and fair. I'd hate to be claiming something incorrectly.

No she is able to see once she has her glasses on, she is awaiting squint surgery. Her prescription is -7.25, with glasses she can see but it obviously isn't perfect.

I mean I filled out the form truthfully and explained everything in detail that I answered so they obviously saw there was a need for it. Daily life is a struggle and it's not as black and white as it may seem on an internet thread.
Thanks for your advice though.
I'll give them a call Monday.

DLA has never required a diagnosis. It's about how capable you are at daily tasks. A diagnosis helps but is not required and never has been.

What you are able to do/not do has always been more important than why you can't do them.

Does anyone perhaps have the address to write to them please? As I know getting through on the phone is a nightmare. Can't seem to see it online.
Thankyou

The why would be the symptom - but the symptom exists long before the diagnosis. My parents were aware I couldn't speak long before I was diagnosed with deafness so they wrote in my DLA form I was unable to speak despite being two. With a letter from my GP confirming it was true.

When I got reassessed at 5 they then wrote in that I had now been diagnosed as deaf but it wasn't required on the original one because they could document the existence of the symptom. You can fill in the whole form that way.